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Eating Behaviors 29 (2018) 14–18

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Eating Behaviors journal homepage: www.elsevier.com/locate/eatbeh

Caregiver burden and illness perceptions in caregivers of medically hospitalized youth with anorexia nervosa

T

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Abigail Matthewsa, , Katrina R. Lenza, James Peugha, Emily C. Coppsb, Claire M. Petersona a b

Cincinnati Children's Hospital Medical Center, Division of Behavioral Medicine and Clinical Psychology, United States Xavier University, School of Psychology, United States

A R T I C L E I N F O

A B S T R A C T

Keywords: Anorexia nervosa Family-based therapy Caregiver burden Illness perceptions

Caregiver burden is common in caregivers of youth with anorexia nervosa (AN) and could impede the successful implementation of family-based therapy (FBT). Thus, it is important to better understand mechanisms by which caregiver burden is developed and maintained. This study aimed to examine the relation between caregiver illness perceptions about AN, symptom severity indicators, and caregiver burden in a sample of medically hospitalized youth with AN. Fifty-one youth with AN (N = 34) or Atypical AN (AAN; N = 17; mean age = 14.85, SD = 1.41; 76% female) and their primary caregivers (N = 47 mothers and N = 4 fathers) completed self-report questionnaires at hospital admission. Collected data included caregiver and youth illness perceptions about AN, caregiver burden, and youth self-reports of psychological symptoms. Physiological data regarding symptom severity included admitting percent of expected body weight (%EBW) and minimum heart rate during admission. Findings indicated that caregiver beliefs about negative consequences of AN were associated with caregiver burden, independent of youth age, sex, illness duration, and diagnosis. Youth reports of symptom severity, % EBW, and low heart rate were not associated with increased caregiver burden. Findings suggest that the subjective experience of having a youth with AN are a greater determinant of caregiver burden than objective indicators of illness severity. Further, these findings provide support for the FBT clinician to strike a balance between providing information about the potential consequences of AN, while instilling hope for recovery and bolstering parent self-efficacy.

1. Introduction Anorexia nervosa (AN) is often a chronic condition with the greatest incidence rate among adolescents (Herpertz-Dahlmann, 2009). Family Based Therapy (FBT) has the most empirical support for the treatment of pediatric AN and is associated with faster recovery rates, higher sustained remission rates, and a significant decrease in hospital readmissions and associated treatment costs as compared to individual psychotherapy (Couturier, Kimber, & Szatmari, 2013; Crow & Nyman, 2004; Lock et al., 2010; Lock, Couturier, & Agras, 2008). Theoretically, FBT draws upon the neurobiological underpinnings of AN, emphasizing that brain impairment secondary to starvation impedes the patient's ability to make appropriate health choices, including self-regulation of food intake. In FBT, caregivers are considered the primary treatment resource; they are directed to remove food-related decisions from their youth and to assume responsibility of all eating-related tasks (e.g., meal planning, preparation, supervision) until a healthy weight is restored, regardless of the child's motivation to change. Thus, treatment success is contingent upon caregivers' capabilities in these tasks (Lock & Le ⁎

Grange, 2013). It is well established that the hallmark characteristics of AN, including body image distortion, fear of weight gain, emotional consequences of malnutrition, and the ego-syntonic nature of symptoms, often impede one's motivation to recover (Guarda, 2008; Vitousek, Watson, & Wilson, 1998; Westwood & Kendal, 2012). Thus, caregivers often recognize signs of the illness before affected youth even perceive symptoms to be problematic (Treasure, Gavan, Todd, & Schmidt, 2003). It is common for caregivers to initiate treatment and, in FBT, spearhead the weight restoration process while youth remain highly invested in AN symptoms. Strong resistance and emotional reactivity in youth is common during phase 1 of FBT. Consequently, caregivers may struggle with increased anxiety associated with consistent implementation of FBT interventions (Halmi, 2013; Whitney & Eisler, 2005). Independent of treatment modality, caregiver burden is consistently illustrated in families of youth with AN (Padierna et al., 2013; Zabala, Macdonald, & Treasure, 2009), even exceeding that experienced by caregivers of individuals with schizophrenia (Treasure et al., 2001). Generally, caregiver burden is associated with poor mental health,

Corresponding author at: Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave., MLC 3015, Cincinnati, OH 45229, United States. E-mail address: [email protected] (A. Matthews).

https://doi.org/10.1016/j.eatbeh.2018.01.003 Received 19 April 2017; Received in revised form 14 January 2018; Accepted 22 January 2018 1471-0153/ © 2018 Elsevier Ltd. All rights reserved.

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2. Method

lower quality of life, and experiencing negative aspects of care more intensely (de la Rie, van Furth, De Knoning, Noordenbos, & Donker, 2005; Martín et al., 2013). Given the paramount role of caregivers in successful FBT implementation, it is imperative to better understand the mechanisms by which caregiver burden is maintained. This will facilitate the development of interventions targeting caregiver burden in AN that in turn, could improve engagement in FBT. In this study, we sought to examine illness perceptions in caregivers of youth with AN, given findings that negative-held beliefs about AN contribute to caregiver distress (Whitney, Haigh, Weinman, & Treasure, 2007). Generally, one's beliefs about a given illness (i.e., illness perceptions) have been implicated in treatment engagement, coping, and outcomes in both medical and mental health conditions, including cancer, cardiac and pulmonary diseases, diabetes, irritable bowel syndrome, asthma, depression, and psychotic disorders (Ashley, Marti, Jones, Velikova, & Wright, 2015; Bucks et al., 2009; Fortune, Barrowclough, & Lobban, 2004; Leventhal, Phillips, & Burns, 2016; Olszanecka-Glinianowicz & Almgren-Rachtan, 2014; Rutter & Rutter, 2002; Watson et al., 2006; Weinman, Petrie, Sharpe, and Walker, 2000; Wisting et al., 2015). In adults with eating disorders (ED), research indicates that negative illness perceptions are associated with higher levels of depression, anxiety, and more severe and chronic ED symptoms (DeJong, Hillcoat, Perkins, Grover, & Schmidt, 2012). Despite the central role that caregivers have in facilitating recovery in FBT, little is known about caregiver illness perceptions about AN. Sim and Matthews (2013) found that mothers of youth in outpatient care perceived AN to be less understandable and controllable than mothers of youth with type 1 diabetes. Further, perceived consequences of AN, illness chronicity, and emotional burden secondary to their child's illness was associated with poorer family functioning, maternal anxiety, and depression (Sim & Matthews, 2013; Whitney et al., 2007). Padierna et al. (2013) found that mother's beliefs about the severity of their child's ED symptoms predicted greater caregiver distress, whereas neither child self-reports nor physician clinical ratings of symptom severity impacted caregiver well-being. In the current study, we examined illness perceptions in the primary caregivers (mothers and fathers) of youth with AN, and the relation between illness perceptions about AN and caregiver burden. Our sample was unique in that youth were acutely ill and medically hospitalized for complications secondary to AN (i.e., bradycardia, postural orthostatic tachycardia syndrome, electrolyte imbalance). Further, youth in our sample were newly diagnosed with AN and had never received mental health treatment for AN. Study aims were threefold. First, we were interested in the relationship between caregiver and youth illness perceptions about AN. Given the ego-syntonic nature of AN and common denial of symptom seriousness in patients with AN (e.g., Westwood & Kendal, 2012), we hypothesized that caregivers would perceive AN more negatively than youth. Because FBT relies on the caregiver's motivation to engage in treatment, highlighting disparate illness beliefs of caregivers and patients with AN could foster caregiver persistence in implementing FBT despite child distress. Given established evidence that caregiver burden is associated with negative beliefs about AN, particularly perceived consequences, chronicity, and emotional burden (Sim & Matthews, 2013), we examined the relation between these specific illness beliefs and burden in caregivers of medically hospitalized youth with AN. In line with previous findings (Sim & Matthews, 2013), we hypothesized that negative illness perceptions held by caregivers would be associated with burden associated with caring for a youth with AN. Finally, given previous findings that child self-reports and clinician ratings of symptom severity were not associated with caregiver burden in ED (Padierna et al., 2013), we examined the association between physical indicators (e.g., lowest heart rate during hospitalization, percent expected body weight (%EBW) at admission) and child-reports of symptom severity with caregiver burden.

2.1. Participants Participants included 51 youth (mean age = 14.85, SD = 1.41; 76% female) hospitalized at a Midwestern children's hospital for medical complications secondary to AN, and their primary caregivers (N = 46 mothers and N = 5 fathers). Participants met DSM-5 diagnostic criteria for AN (N = 34) or atypical AN (AAN; N = 17; American Psychiatric Association, 2013). At admission mean body mass index (BMI) for youth with AN was 16.02 kg/m2 (SD = 1.41) and mean percent of expected body weight (%EBW; defined by the 50th percentile for current height and age (Kuczmarski et al., 2000)) was 80.14% (SD = 6.90%). In youth with AAN, mean BMI was 18.61 kg/m2 (SD = 1.63) and mean % EBW was 93.33% (SD = 5.86%). Mean illness duration for all participants was 6.66 months (SD = 5.10), mean length of hospital admission was 12.94 days (SD = 7.35) and mean minimum heart rate during admission was 37.31 beats per minute (SD = 6.46). Study exclusionary criteria included prior treatment history of FBT for AN, psychosis, acute suicidality, non-English speaking youth and/or caregiver, and neurodevelopmental disorders such as autism spectrum disorder, or intellectual disabilities in youth and/or caregiver that would prevent them from being able to read or interpret self-report questionnaires. This study was approved by the institutional review board and informed consent and assent were obtained from caregivers and youth. 2.2. Procedure Assessment batteries were completed in participants' hospital rooms within 72-hours of admission. Youth and caregivers completed self-reports of illness perceptions about ED (Brief Illness Perceptions Questionnaire; Brief IPQ). Caregivers also completed a questionnaire about caregiver burden in the context of caring for child with ED (Eating Disorder Symptom Impact Scale; EDSIS) and youth completed symptom assessments of ED, depression, and anxiety (Eating Disorders Examination-Questionnaire; EDE-Q; Children's Depression Inventory-2 Short Form; CDI-2-S; Multidimensional Anxiety Scale for ChildrenSecond Edition; MASC-2). 2.3. Measures 2.3.1. Brief Illness Perceptions Questionnaire (Brief IPQ; Broadbent, Petrie, Main, & Weinman, 2006) The Brief IPQ is a self-report assessment of one's cognitive and affective perceptions about a given illness. It consists of 8-items that represent unique dimensions of illness beliefs. Whereas composite scores can be used on the Brief IPQ, summing items is recommended with caution and may not be valid with certain illnesses. Specifically, because the Brief IPQ is used to assess illness beliefs across diverse conditions, dimensions of illness perceptions are related in different ways based on characteristics of a given illness (Broadbent et al., 2015). Three specific dimensions of illness perceptions were used in our study, including perceived consequences of ED, perceived timeline of the illness (acute-chronic), and emotional impact of ED symptoms, as these domains have been associated with caregiver burden, maternal wellbeing, and family conflict (Sim & Matthews, 2013). Brief IPQ items are rated on a 0–10 scale, with higher scores representing increasingly negative perceptions. A recent meta-analysis demonstrated that the Brief IPQ has predictive validity for various mental and physical health outcomes (Broadbent et al., 2006). In our study, separate caregiver and youth versions of the Brief IPQ were given. Examples of items on the caregiver form included “How long do you think your child's eating disorder will continue?” (0 = “a very short time” to 10 = “forever”) and “How much does your child's eating disorder affect his/her life?” (0 = “no affect at all” to 10 = “severely affects his/her life”). Example items for youth included “How long do you think your eating disorder 15

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will continue?” (0 = ‘a very short time’ to 10 = ‘forever’) and “How much does your eating disorder affect your life?” (0 = ‘no affect at all’ to 10 = ‘severely affects his/her life’). In our sample, both caregiver and youth forms of the Brief IPQ had low internal consistency (α = 0.44 and α = 0.63, respectively). Therefore, individual Brief IPQ items were used in analyses, as opposed to a summed composite score.

Table 1 Youth and caregiver illness perceptions of AN on the Brief Illness Perceptions Questionnaire. Group

IPQ consequences IPQ chronicity IPQ emotional impact

2.3.2. Eating Disorder Symptom Impact Scale (EDSIS; Sepulveda, Whitney, Hankins, & Treasure, 2008) Caregiver burden was assessed with the EDSIS total score. The questionnaire contains 24-items with a 5-point Likert scale (0 = never to 4 = nearly always) in the time frame of the past month. Sample items include “Were there arguments or tensions during mealtimes?” and “Feeling that there could have been something that I should have done.” A total EDSIS score is calculated, with higher EDSIS scores indicating more negative appraisals and greater burden secondary to caring for a child with an ED. Convergent validity for the EDSIS has been demonstrated as acceptable (r = 0.30–0.60) and internal consistency has been demonstrated as good (α = 0.84–0.90). In the current sample, internal consistency was acceptable (α = 0.79).

Youth (SD)

Caregiver (SD)

Wald z

Cohen's d

6.96 (2.11) 3.53 (2.60) 6.81 (2.66)

8.52 (1.90) 5.14 (2.29) 8.76 (1.53)

4.03 3.50 4.63

0.78 0.66 0.90

⁎⁎⁎ ⁎⁎⁎ ⁎⁎⁎

IPQ: Brief Illness Perceptions Questionnaire ⁎⁎⁎ p ≤ 0.001.

errors for the sample (N = 50). A multivariate analysis of variance (MANOVA) in Mplus was conducted to test for differences in Brief IPQ mean scores between caregivers and youth. Direct pairwise comparisons of mean differences, with Bonferroni Type-1 error correction, were performed rather than an omnibus test. A multiple regression analysis was also performed to test if caregiver Brief IPQ consequences, chronicity, and emotional impact scores were associated with caregiver burden after controlling for youth age, sex, ED diagnostic status (AN or AAN), and illness duration. A second multiple regression analysis was performed to test if youth physiological (%EBW & low heart rate) and self-reported psychological symptoms (EDEQ Global score, MASC total score, CDI total score) were associated with caregiver burden after controlling for youth age, sex, ED diagnosis (AN or AAN), and illness duration.

2.3.3. Eating Disorder Examination-Questionnaire (EDE-Q; Fairburn & Beglin, 1994) In our study, ED symptom severity was measured with the EDE-Q Global scale. The EDE-Q is a 28-item self-report questionnaire that assesses the frequency of ED attitudes and behaviors over the past 28 days (Fairburn, 2008; Luce & Crowther, 1999). The EDE-Q shows good reliability (Luce & Crowther, 1999) and validity (Fairburn & Beglin, 1994), and has adequate convergence with the interview-based Eating Disorder Examination (EDE; Berg, Peterson, Frazier, & Crow, 2012). In an adolescent sample, reliability coefficients for EDE-Q subscales ranged from 0.70 to 0.94 for male participants and from 0.84 to 0.97 for female participants (Mond et al., 2014). In our sample, excellent internal consistency was demonstrated for items comprising the Global scale (α = 0.95).

3. Results Means, standard deviations, and effect sizes for youth and caregiver illness perceptions on the Brief IPQ are shown in Table 1.

3.1. Illness perception differences between caregivers and youth

2.3.4. Children's Depression Inventory-2 Short Form (CDI-2-S; Kovacs, 2010) The CDI-2-S is a 12-item, self-report assessment of cognitive, affective, and behavioral symptoms of depression in children and adolescents ages 7–17 years old. Each CDI-2-S item presents three phrases corresponding to varying degrees of a given symptom of depression. The respondent selects the phrase that best represents how they feel (e.g., “I have fun in many things,” “I have fun in some things,” or “Nothing is fun at all”). Higher total scores on the CDI-2-S indicate more depressive symptoms. The questionnaire has demonstrated excellent reliability and validity (Kovacs, 2010). Excellent internal consistency was demonstrated in our sample (α = 0.93).

MANOVA results indicated caregivers showed significantly higher Brief IPQ consequences, chronicity, and emotional impact item scores when compared to youth.

3.2. Caregiver burden and illness perceptions Multiple regression analysis results showed that Brief IPQ consequences were significantly associated with caregiver burden (b = 2.57, p < 0.01). The overall multiple regression analysis model explained 38% of the variance in caregiver burden. Specifically, the addition of caregiver Brief IPQ consequences to a multiple regression model containing all other predictors and covariates explained an additional 14% of caregiver burden variance. Table 2 presents findings from this analysis.

2.3.5. Multidimensional Anxiety Scale for Children-Second Edition (MASC2; March, 2012) The MASC-2 Total score was used as an assessment of youth anxiety. The MASC-2 is a 50 item self-report measure for youth ages 8–19. Items are rated on a 4-point Likert scale, ranging from 0 (“Never”) to 3 (“Often”) regarding the frequency of which anxiety symptoms are experienced. The MASC-2 has demonstrated good to excellent test-retest reliability, and fair to excellent inter-rater reliability (March, 2012). Internal consistency within our sample was very good (α = 0.87).

Table 2 Multiple Regression Analysis of Illness Perceptions and Caregiver Burden.

2.4. Statistical analyses All analyses were performed using Mplus, version 8.0 (Muthén & Muthén, 1998–2017). Missing data were handled via maximum likelihood estimation. Further, 5000 bootstrap replications were performed for all analyses below to address non-normal data concerns and to obtain empirical rather than observed parameter estimate standard

Caregiver burden

b

S.E.

p - Value

95% C.I. (b)

Predictors IPQ consequences IPQ chronicity IPQ emotional impact Age Sex ED diagnosis Illness duration

2.57 0.28 2.05 −1.88 −3.38 3.93 −0.19

0.88 0.64 1.22 1.37 3.97 3.46 0.27

< 0.01** 0.66 0.09 0.17 0.40 0.26 0.47

(1.22, 4.77) (−1.01, 1.53) (−0.51, 4.37) (−4.29, 1.09) (−10.91, 4.66) (−2.70, 11.00) (−0.82, 0.24)

IPQ: Brief Illness Perceptions Questionnaire, ED: eating disorder. Note: 95% confidence intervals computed based on 5000 bootstrap samples.

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In our study, caregiver burden was independent of physiological indicators of AN severity, as measured by admitting %EBW and minimum heart rate during admission. Further, youth reports of ED severity, anxiety, and depressive symptoms were not associated with caregiver burden. These results indicate that having an acutely ill child with AN influences caregiver burden, above and beyond child self-report assessments and objective medical indicators of illness severity. Our results are similar to those of Muscara et al. (2015) who found that among parents of children treated in oncology and cardiology, stress responses were unrelated to child diagnoses or length of hospital stay. Our findings are also in line with Lazarus' cognitive theory of stress and coping, which proposes that a caregiver's subjective experience of a given situation directly influences stress experienced (Lazarus & Folkman, 1984). Our finding that caregiver burden was independent of AN symptom severity emphasizes the relation between the subjective experience of having a youth hospitalized with AN and caregiver distress. In this respect, it is imperative that psycho-education about AN be provided at treatment outset, in an effort to minimize blame on the caregiver or child and to bolster parent self-efficacy. Caregivers may also benefit from further emphasis on self-care by the FBT clinician. Encouraging the caregiver to rely on their support system to help with demands, emphasizing the importance of engaging in pleasurable activities when feasible, and facilitating a mental health referral for struggling caregivers could mitigate caregiver burden. A significant limitation to our study is its cross-sectional nature. Thus, findings are not indicative of a causal relationship between illness beliefs, caregiver burden, and symptom severity variables. Future studies are warranted to examine how caregiver and youth illness perceptions about AN change over the course of FBT and whether beliefs about the illness impact treatment outcomes. Finally, our sample was limited to an acutely ill sample of youth with medical complications, secondary to malnutrition and findings should be generalized accordingly. Our study supports the relation between negative illness beliefs about AN and caregiver burden, particularly related to caregiver beliefs about consequences of AN. Further, we found that caregiver burden was independent of objective illness severity indicators, suggesting that a caregiver's subjective experience of their child's illness has a greater impact on caregiver burden. These findings have important clinical implications, particularly in the implementation of FBT. Future studies will need to test the prospective relationships between caregiver burden and FBT outcomes to determine if overly negative beliefs about illness consequences impede a caregiver's ability to effectively implement FBT. It is also noteworthy that overly positive illness beliefs can be detrimental (de Ridder et al., 2000; Hurt et al., 2012). Although positive illness perceptions and an optimistic outlook are generally associated with improved well-being and treatment outcomes (Hagger & Orbell, 2003), effective FBT requires parents to experience an optimal level of anxiety (Lock & Le Grange, 2013). Therefore, in FBT, it is crucial that caregivers have a realistic understanding of the potential consequences of AN, while concurrently feeling confident that they can facilitate their child's recovery.

Table 3 Multiple Regression Analysis of Youth Symptom Severity and Caregiver Burden. Caregiver Burden

b

S.E.

p - value

95% C.I. (b)

Predictors %EBW Low heart rate EDEQ global score MASC total score CDI total score Age Sex ED diagnosis Illness duration

31.05 −0.08 0.95 −0.04 0.65 −1.72 −1.47 −3.82 −0.22

29.49 0.44 2.97 0.15 0.69 2.28 7.72 7.46 0.50

0.29 0.86 0.75 0.79 0.35 0.45 0.85 0.61 0.67

(−30.05, 86.97) (−1.12, 0.58) (−5.11, 6.94) (−0.39, 0.22) (−1.01, 1.73) (−5.46, 3.31) (−14.48, 14.21) (−19.50, 8.67) (−1.40, 0.56)

EBW: expected body weight, EDEQ: Eating Disorder Examination Questionnaire, MASC: Multidimensional Anxiety Scale for Children-Second Edition, CDI: Children's Depression Inventory-2 Short Form, ED: eating disorder. Note: 95% confidence intervals computed based on 5000 bootstrap samples.

3.3. Caregiver burden and youth symptom severity Results from the second multiple regression analysis showed no significant associations between caregiver burden and youth physiological and psychological symptom severity indicators (See Table 3). 4. Discussion Our study provides support that caregivers perceive AN to be more threatening than their medically hospitalized youth. Specifically, caregivers believed AN to have significantly more consequences, to be more chronic, and to perpetuate more emotional distress than their affected youth, despite objective illness severity, as evidenced by medical instability. These findings are not surprising, given the egosyntonic nature of AN, lack of insight, and recovery ambivalence that is characteristic in individuals with AN (Rieger, Touyz, Swain, & Beumont, 2001), and further emphasize the need for parents to assume control over their child's eating in FBT. In line with our hypotheses, caregiver burden was associated with caregiver beliefs about AN, particularly in the domain of perceived consequences of the illness. Specifically, perceiving AN as having more consequences to the youth was associated with greater caregiver burden, independent of youth age, sex, illness duration, and diagnosis (i.e., AN or AAN). These findings are consistent with prior research demonstrating a positive relationship between negative illness perceptions of AN and caregiver distress (Whitney et al., 2007). It is possible that as caregiver burden increases in caregivers of youth with AN, implementing FBT becomes increasingly difficult, particularly in light of common challenges associated with phase 1 of treatment (e.g., youth resistance to eating, emotional distress associated with eating and weight gain). Thus, our findings that perceived negative consequences of AN are associated with greater caregiver burden underscore the need for clinicians to strike a balance between ensuring a caregiver's understanding of the illness and associated consequences, while concurrently instilling hope for recovery and parental self-efficacy. Initial FBT interventions focus on educating caregivers about the potentially life-threatening consequences of AN, as a means to mobilize caregivers to take immediate action against the illness. Given that being overly optimistic about and minimizing the seriousness of an illness may prevent active coping and treatment engagement (de Ridder, Schreurs, & Bensing, 2000; Hurt, Weinman, Lee, & Brown, 2012), caregivers without a realistic understanding of the potential consequences of AN may not be invested in treatment. However, it is possible that for some parents, perceiving consequences as hopeless or insurmountable could result in caregiver distress that could inhibit treatment implementation. Yet for other families, this caregiver burden could mobilize them into action. Future studies are needed to examine the impact of caregiver burden on treatment outcomes in FBT.

Disclosures Abigail Matthews reports no financial interests or potential conflicts of interest. Katrina Lenz reports no financial interests or potential conflicts of interest. Emily Copps reports no financial interests or potential conflicts of interest. Claire Peterson reports no financial interests or potential conflicts of interest. References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.

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